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An Incurable Disease

Author Information

Dr. Kind is director, Pediatric Medical Student Education, Children’s National Medical Center and The George Washington University School of Medicine, Washington, DC; e-mail: (tkind@cnmc.org).

It was springtime about 16 years ago. Well, precisely 16 years ago, as I’d be kidding myself if I said I didn’t know exactly when my father developed a recurrence of cancer. When he was diagnosed the first time, I was a teenager with role model parents. I had thought the cancer had been treated, cured, and would never come back. That was before the maturity that came naturally with time and before the mild hypochondriasis that accompanies being a person and a medical student at the same time. Perhaps it had never truly been in remission, but either my parents didn’t tell me that or they didn’t know.

He died that summer in a New York City hospital bed. Flash forward three years, when in medical school I first learned that multiple myeloma—the condition that took his life in its prime—was considered a fatal disease. Or, at least, incurable. How did I come to learn this? Oddly, it was not from the very fact that he died. Even in his last week of life I was wondering how our family would fit twice-weekly dialysis into our lives, and would he still be able to take me at a set of tennis? Despite spending the spring at his hospital bedside, I wasn’t asking myself the grander questions like would he be at my wedding someday or teach his hypothetical grandchildren to swim. Rather, I wondered if I would have to take on more responsibility for raking the leaves at our family’s home in the suburbs.

And so it was, three years after his death, that I learned that he’d had a fatal disease, simply by reading the plain description in my pathology textbook: “Multiple myeloma is an incurable disease, with a mean survival of 6 months in untreated patients and 3 years with appropriate chemotherapy. Death is usually due to either infection or renal failure.”1 This was true indeed for my 56-year-old father.

In medical school, residency, and fellowship, we teach, learn, and grow, but to what extent do we fully recognize that in a typical class—of 100 medical students, 30 residents, or just 3 fellows—someone in that audience may have experienced the same dreadful condition highlighted in noon lecture or presented as a bullet point during morning rounds? Quite likely, there is a learner who has had a family member recently diagnosed with that very disease too casually mentioned as fatal, or has had a significant other “fail treatment.” Collectively as a medical profession, we have increasingly come to understand the need to treat our patients and families humanely, tailoring our discussions to their needs and providing the necessary support; yet we need to do the same for those we educate. How many medical students have asked their preceptors, with whom they feel some connection, about their mother’s persistent joint pains or their uncle’s as-yet unexplained weight loss? These trainees are thinking about their near and dear while they read, attend lectures, and assess patients. Some may even be wrought with unnecessary guilt, tireless worry, desperation, or the aforementioned hypochondriasis about their own children as they learn about abnormal developmental patterns, about Wilm’s tumor, about autism.

I had wanted to write about my father for a long time, but I needed to critically reflect first. And yet, I’m not writing about my father here, I am only touching upon how we come to learn about diagnoses and prognoses, whether for our loved ones or our patients. I share my reflections now because of my increased role in the academic medical educational setting, and because my daughter, just shy of four years old, finally asked me who my daddy was. There are many ways in which I could begin to answer her, but that he was an incurable disease would be the least accurate.

Terry Kind, MD, MPH

Dr. Kind is director, Pediatric Medical Student Education, Children’s National Medical Center and The George Washington University School of Medicine, Washington, DC; e-mail: (tkind@cnmc.org).

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